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♪My Diagnosis Has a First Name♪

Hello, wonderful people! The last few months have been quite “eventful” around the world; how is everyone holding up? I realize I haven’t posted in a few months, and I’m sorry. I never intended to take such a long break, however, I think I needed it.
So let’s see, the last we chatted I was in the process of testing. Here’s a look at what it’s like to wear the ambulatory EEG.

The hat helped keep the leads in place.
The kids thought I looked like an alien.

I sported these fashionable wires (and the recording box/battery inside my purse) from a Thursday afternoon until that Monday Morning. Let me tell you, everything from using the bathroom, to changing clothes, to remembering my colorful locks were attached when standing, proved more challenging than I anticipated. You can imagine the joy I felt that Monday morning when I was able to remove all the leads and take a real shower. Now, I understand that a common aftermath of this test is skin irritation from having those little stickers on so long. I think I have really sensitive skin because I got to flaunt (insert sarcasm here) this lovely forehead rash for about a week.
In addition to the tests I mentioned in my last post, I had some bloodwork done. The result of everything? I have officially been given a diagnosis! I have Psychogenic Dystonia and Hyperadrenergic POTS. I’ll leave links at the bottom of the post, if you would like to learn about those. As for treatment, I have started taking a beta blocker and a new antidepressant.
The beta blocker seems to be helping. My legs are not as blotchy and purple as they normally are when standing. I’m also having less palpitations and feelings of being lightheaded. Want to know some more great news? I’ve only had a couple big episodes (Psychogenic Dystonia) in the six weeks I’ve been on the new antidepressant! That one was a bit trickier. The first few days, I was taking the old and new antidepressant. Then came a few weeks of just the new one. I won’t lie, I didn’t like myself very much during that time. In those days, I would have rather had my episodes if it meant I wasn’t irritable, cranky and feeling low. I called the doctor and he gave me the okay to go back to taking both antidepressants each day. I’m feeling much more balanced now. I’m thankful that my family was understanding and forgiving during that roller-coaster ride. Want more good news? Both new medications I’m on have caused weight gain and a better appetite. I have always struggled to put on any weight, but in those six weeks, I’ve gained eleven pounds! I haven’t been able to do that since I was pregnant. I’m feeling healthier with the added weight and less self-conscious.
So that has been my bit of good news for you all. You know, after trying for a decade to find a diagnosis, it is a relief to have a name to put with what’s going on. It is a reassurance that I’m not crazy. I could be upset that no other doctor has been able to figure it out, but I’m not. I feel like this was the path I was meant to be on and God used me for something greater than I will ever be able to understand.

Thank you all so much for the prayers  for answers. God is great!

With love,
J♡

Hyperadrenergic POTS

Psychogenic Dystonia

Getting Closer to a Diagnosis

I had my first appointment with the movement disorder specialist on March 12th. The office itself was so inviting, filled with comfortable couches and warm colors. It did not have that typical sterile doctor office feel to it, though it was very clean. Coupled with a friendly staff, it certainly took some anxiety out of that first visit. While in the first room where the nurse takes the vitals, I started to have an attack. By the time we (my husband and mom were with me) made it to the the doctor’s office down the hall, I was going in to a full attack. I was thankful for this, as the doctor was able to see firsthand what these are like. Let me tell you, this doctor is the best one we have seen in all our years of searching for answers.

He was kind and very patient. He made careful observations and asked plenty of questions. My husband and mom did their best to answer when I couldn’t get the words out. Once my body decided to settle down a bit, the doctor started talking about his plan of action. He said that he felt it was possible that I may have Dystonia and Psychogenic Movement Disorder. He mentioned the possibility of something called dystonic storms. He asked the nurse to check with insurance about any pre-authorization for tests.

By the time we checked out at the front desk, we were scheduling all of my tests.

To our surprise, we didn’t have to wait weeks to complete them. The first one I did was the neuropsychological evaluation. It consisted of a short interview with a very nice neuropsychologist who specializes in movement disorders, and roughly two hours of tests that evaluated memory, cognitive thinking, and mood. At the end of that visit, the doctor was able to tell me that my cognitive thinking and memory appeared to be in good shape. This scarecrow does have a good brain. She said that she could see that my health issues were of big conern and that yes there is some depression and anxiety present. I must admit, that appointment was mentally draining.

It took two more trips to the office to complete the other tests. I’ll be honest, some of them were uncomfortable and even painful. It didn’t help that I was having attacks during some of them, I’m sure. I have one test left to complete, the ambulatory EEG. I will be getting this hooked up on Tuesday and will wear it for three days while going about daily life. My follow-up with the doctor is set for April 13th. With any luck, the results will come back quickly and maybe they will be able to squeeze me in sooner. I finally feel like we are going to get answers. I am so very thankful for this doctor, my amazing family and friends, and all the love, support, and prayers. Thank you, God!

Here is a link that I found informative: https://dystonia-foundation.org/what-is-dystonia/faq/

Take care friends, and as always, thank you for being here with me on this journey.

With love,

J♡

Please,tell me how you are doing.

Hello, dear friends. I will try to do a post tomorrow on how my appointment with the movement disorder specialist went.

Tonight though, I just wanted to check in with everyone. Covid-19 is affecting so many people in so many ways. Our little family is trying to stay in as much as possible. While the seriousness of this virus is scary, the other thing I worry about is people losing their sense of humanity. You have people who are hoarding essential items or harming others over the essentials. I pray that this virus does not harden hearts.

So, my question to you is this:

Where are you? More importantly, how are you doing (physically, mentally, emotionally)?

On a lighter note, here are some things I found on Facebook that I found amusing in regards to the toilet paper shortage.

I keep joking about sewing tp squares in pretty patterns and super soft material. I DO plan on trying to sew masks this weekend and then donate them to assisted living facilities that are in short supply.

Please take care, friends. Praying for all of you and your loved ones.

With love,

J♡

Time for a Medical Update

Hello, friends! Back in October, I shared with you that I had been having seizures. I did finally make it in to see the neurologist in November. He ordered a brain mri, which thankfully came back negative. He also ordered an EEG. It also came back negative. The doctor’s conclusion? Movement Disorder. He could not say what type of movement disorder; for this I would need to see a movement disorder specialist. Ugh, more referrals, more phone calls, more denials, more stress. Thankfully my momma bear came to the rescue again. Last week she found a doctor, and my appointment is set for the 12th of this month. I have a good feeling about this one; I really think we’ll be able to get some answers. We are all anxious as it has been a trying several months. For a little while the episodes seemed to let up, and I even started driving again. Unfortunately, they are back full-force and I have quit driving once more. There were four times while driving that I had these episodes. Thankfully, I was able to pull over before they went full blown. It’s too scary and they escalate so quickly. I can’t take the risk of putting my family or anyone else in danger.

I was hesitant to add this video, but I wanted to give you all an idea of what I am talking about when I mention these episodes (attacks, as we call them). My muscles tighten up and have a difficult time releasing. The positions that I end up in at times are so painful. The more severe episodes leave me completely wiped out and in need of a long nap. This video shows a mild episode that I had last night. Please excuse the goofy attire and crazy hair -it was a lazy Sunday.

I pray you all have a wonderful week. Thank you all for your patience, kindness and support.

With love,

J♡

Heaven Gained an Angel

Hello, dear friends. I know that I need to update about many things, but tonight I just want to repost a poem I wrote almost a year ago. I wrote this poem about my aunt. She was a strong and beautiful soul whom I love very much. This morning, God called her home. While so many will miss her tremendously, I think there’s a bit of peace in knowing that she no longer has to fight the medical issues she had.

Wanting to Hold You

By J♡

I wanted so badly
To hold you tight
Not knowing when
You would see the light
But your body has become
Oh so frail
Your bones are weak
And the muscles, they fail
So thin and fragile, is your skin
I wish I could make you
Healthy again
I see the frustration
In your eyes
It breaks my heart
Every time you cry
I’m dreading the day
I get the call
That says you are now
Watching over us all
So badly I wanted
To hold you tight
Not knowing when
You would see the light
Not wanting to hurt
Your delicate frame
I kissed your forehead
And drove away
Your scent lingered
As I began to pray
God, when it’s time
For you to take her home
Let her be not afraid
Without pain and not alone

Thank you for reading. Hug your loved ones and tell them how much they mean to you. I really hope you all are doing well.

With love,

J♡

Hello 2020

December went by far too fast, as it does every year. I hope that you all had a safe and fun New Year’s Eve. I am thankful for the memories made, the lessons learned, the blessings and the struggles that 2019 brought. I pray that this new year brings you all love and happiness!

Now that the holidays are over and things are slowing down a bit, my goal is to get back to blogging regularly. I’m trying my best to get through a depressive episode, so it may take me some time to get back into it. Thank you for being patient with me and sticking around. Lots of hugs to you all.

With love,

J♡

Getting Back to Crafting

I spent close to two months away from doing any crafts. It feels good to get back to it; it’s been very calming. Here’s what I’ve been working on.

Sewing scrappy squares. Not sure what I’ll turn them into yet.

Shirt for my daughter. Iron on design that I painted.

My white shoes that were stained needed some color.

Just a little reminder for myself. “Take one step at a time”.

This was just delivered today. Now I can let my family know if I need help, and they won’t feel like they need to check on me so often. I didn’t like the plain white…maybe I’ll glue on gems instead?

I hope you are all having a great weekend.

With love,

J♡

In the Spirit of October/Halloween 🍊🎃

The stores and office buildings are looking festive. The neighborhoods are being decorated with pumpkins, fake spider webs, ghosts, and skeletons. I have yet to set out any decorations, but I thought, what better time of year is there then now, to share my own skeleton? So here ya have it, robo-human skeleton me.

Something makes me feel like perhaps we should all have gone to dinner, before getting so intimate. Please excuse my odd sense of humor…or, just go with it. Your choice ☺.

Happy October, my friends.

With love,

J♡